Monday, June 9, 2014

Liberation feels good!

Maya had a great year in kindergarten.  Our first year in our "home" school was wonderful.  Maya had a great team that was open to making modifications to best suit her needs.  I'm very grateful for the teachers and instructional aides that were so willing to get to know Maya.

What I'm learning is that I need to give Maya the opportunity to be herself.  She is who she is and I can't compare her to typical children.  I have to let her be the interesting character she is and let her develop her own story in this book of life. She does not fit into the mold of a child of her age.  Yes, all children are unique but Maya has Down Syndrome and she also has other characteristic that perhaps a typical child does not have.  These things make her different but they don't take away from the fact that she is a child who enjoys many things like swimming, dancing, dress up, giving hugs and not going to bed on time.

I'm trying to find the balance of having her be exposed to what typical children like, but at the same time I realize that she might not even care about those things.  Birthday parties are notoriously an issue for her.  She doesn't like all the crazy loud things that go on with birthday parties.  She doesn't like the "happy birthday song".  For so long I tried to get her to go to these events and I still feel it's important but I've come to the realization that we might not stay very long at these parties.  We certainly don't stay for cake and the HB song.  I believe that this is a lesson for me to learn because Maya could care less about this.  In some ways I wanted her to be included so much with typical kids that I wasn't letting her be who she is.  Letting go of that yearning for a typical child is helping me love and accept her for who she is and what she offers us in this life.

It's OK to be different.  That's what I'm learning.  It feels liberating.




Sunday, September 15, 2013

What's Maya been up to?

Maya is such a busy girl! She's always keeping me on my toes. Time seriously flies right by now that she's in my life. We are so busy, it's true though, that I like it busy. I figure I'll rest when I'm dead. For now we keep on chugging along, making strides and learning so much along the way.

What's Maya been up to?

Maya loves dancing! I knew this from an early age, but now Maya is enrolled in a dance class. A little dance studio opened up a year ago in our neighborhood and I heard good things about it from friends. So over the summer I enrolled Maya in a beginning dance class. It's not very formal, but they have their little routine they do. The amazing thing is that Maya follow directions really well and enjoys every bit of it. She stands where she is supposed to stand and tries with all her might to mimic the dance teachers. I'm hoping that she can move up soon to the beginning ballet and tap class.

Dance class.

Maya's speech has taken off! As always Maya teaches me so many things. The greatest things she teaches me is acceptance and to have patience. Maya always does things in her own time and way. It's been this way from the moment she was born.  I always want her to reach her milestones in a timely manner, but my darling Maya will not do it until she is ready. She is ready now for speech. Slowly and surely she is improving her speech. She is repeating words and saying phrases. She is even reading. I'm not the only one saying this so it's not just mama pride. It's pretty awesome!

What did you say?

Maya wears glasses! Earlier this year I took her to a new eye doctor. I had heard about vision therapy and was curious about how Maya might benefit from it. What we found out is that Maya is very farsighted. Well we knew this from the previous eye doctor but he said it was no big deal and that it was normal. The new doctor said that she needed glasses. After some thought about which doc to believe, and a second opinion, we ordered the glasses and decided to give it a try. At first it was hard, she just didn't want to have them on, but now she wears them about 90% of the time. I'm not sure if I see any difference, but the doctor says that her prescription is improving. 

Dancing!

Maya is in kindergarten! In August Maya started to attend school as a kindergartner. It's an exciting step for us. She's full time in school, so there's all the wonderful struggles that come along with it, like eating lunch at school, getting through the whole day and then coming home to do therapy. But so far I really think that she is having a great time. The team involved with Maya are so helpful and really want to make her experience the best. So far Maya is in general ed 70% of the time and pulled out for resource work the rest of the time. The resource teacher has really been creative in helping Maya adjust. Because I mentioned that Maya does well with lists, she has created a list for the whole day. So now Maya can cross off each task that is completed and will see what is coming next (the teachers and aids make notes on the side). It's like a communication book which I also have them fill out. Because Maya can't tell me how her day went, this list and communication book help me know how she is doing.

Ready to go to school.

One last thing about Maya and school, she gets to ride the bus! She loves riding the bus. We are really lucky to have such a great team, including the bus driver and monitor. They are very patient with Maya getting on and off the bus. She really looks forward to riding the bus. I see it when she smiles and her eye light up. The bus noise was bothering her a little so I ordered her some noise cancelling headphones. I don't know why I didn't think about this before. It's the perfect thing for cancelling out loud noises that bother her. I've started to even use them when there is a lot of noise going on at  parties or get togethers.
Bye school bus!

Now that Maya is in school, I am hoping to have more time to do all the things that I've put aside. Slowly I'm getting into a new routine, the house has been neglected and so has my art making. Not to mention this blog. I also hope to volunteer at her school and help the FTO with the wonderful work they do for the community. So much to do but that's the way we like it. =)



Tuesday, March 26, 2013

Update...



Here's a quick update on all the goings on of Maya. In Nov we went to India. Our first trip to India as a family. Maya had the chance to meet her relatives in New Delhi. It was a great trip over all, even with Maya's food limitations and so on. It was wonderful to see how people loved meeting Maya. They all welcomed her with open arms. Maya didn't seem phased about the environment and I really do believe that being around Hindi speakers somehow kicked in her speech. She had been starting to talk minimally after some intense speech therapy last year. But after coming back from India I think she felt more comfortable with her voice.

That being said her speech has really taken off this last month or two. She is really trying. It's not always clear, she has much work to do with articulation, but she is trying. That's the difference with her now. Everyday she is saying words she didn't say before. My way of thinking is changing now. Instead of having her sign, I ask her to say the word and then if I can't understand it I ask her to sign it. We also have a new speech device that I am using to clarify her wants and needs. Something I do see is more frustration from Maya. Waking up her voice has also woken up her needs and wants, I think. There are emotions flowing and it's still hard for her to decipher them.

When I'm with Maya I focus on her and it's easy to stay in that bubble. I don't compare her, I don't wish for other things. I am focused on keeping her on track. And although I know she is delayed, somehow it doesn't effect me emotionally because it's kind of like looking at numbers and stats. But when I see her with her peers it always hits me right in the gut.

 Last weekend we went to a birthday party with kids aging from 3-4. All the kids are talking to each other in full sentences, they are running, jumping and playing pretend. They have awareness of their body, they are focused on all the activities, the food and cake. Maya on the other hand can't quite play with them or keep up. And in one instance when she tried to interact with a little girl, she was shut down. I have seen this with many kids. They don't understand what she wants and because of her lack of speech, most of the time they just stare at her and watch her like she's an alien. I find myself trying to explain to them what she is wanting to do. But most kids at that age just don't care. If you can't keep up with them, you are of no interest to them. This is when my heart breaks. I don't know what Maya is thinking. I don't know if it bothers her as much as it does me. Maybe it rolls right off her little feathers, like water on a duck. Maybe she forgets as soon as she turns the corner. But for me it makes my heart ache. I can't help but feel crushed. Because with all the the strides she makes, it feels like it's just not enough sometimes. I want them to accept her. I want her to have friends. Like the little boys that walk to preschool together every morning, they call to each other and smile and feel happy to see each other. I want that for Maya too.

Like many things with Maya, milestones don't come easily and neither will this. There's only so much I can do, then I have to accept that it is the way it is. I am wishing and hoping that it won't bother her as it does me. That she will be happy with all that she has...and perhaps teach me the same.

Even while I'm sad, I am also happy that she is still making progress. Each party seems to go smoother, each time she seems to participate more and more. At this party, Maya seemed mildly interested in the princess that was painting faces, but when I asked her if she wanted something painted on her face, she said ok. With two children ahead of Maya, she was able to stand and wait without a fuss. She watched and seemed interested the whole time. During her turn she wasn't quite ready for her face to be painted but she was okay with a painted heart on her hand. She seemed happy with it afterwards, showing it to me and swinging it around towards the sky. This is a giant leap for Maya kind.

When Maya was done at the party she let me know. It was right after everyone sang Happy birthday. No surprise there. She usually not into the pizza and cake. That day I decided I wouldn't force the issue. I didn't want to make her sit with the other kids and get agitated with all the noise. She was done. She had an extremely good experience and I wanted to leave it at that.

There was a funny feeling I had as we walked back to the car. It was that time of the day when the sun just starts to set, that's one of my favorite times. I felt content holding Maya's hand, walking away from the party. Feeling her hand in mine, just walking on the sidewalk together, something felt really "normal" about that. I am a mom holding my daughters hand, and she was happy walking with me. This felt just right.




Thursday, November 1, 2012

Step up walk and the end of a good month.

Nov 1st.  Officially the day after the 31 for 21 challenge.  I didn't get to blog the whole month as I've done previous, so I thought I'd try and catch up while I can.  I want to tell you that this last month was a good month.  For October the last couple of years both Maya and I have gotten sick with colds and allergies.  This October we both did really well.  As for writing the 31 days for 21, well I did miss a few days here and there.  It's the way it is now.  Maya keeps me busy as ever. 

I'm always thankful for those moms that can write on their blog everyday.  It keeps the story going.  It keeps us connected.  So I'm hoping that I don't drop off the blogging scene too much like I did the last year.  I'm hoping to keep anyone who reads this, no matter how few, connected to Maya. After all I started this blog for our family and friends who wanted to know how she was doing.

For all my friends and family that know about our little Step Up for Down Syndrome walk in October (formally called the buddy walk), you know many of us work to raise money for our local organization. We walk in the ASU homecoming parade and show our pride in people that have Down syndrome. It's a great way to bring awareness. This year Maya's Dream team had 17 people walking the parade with her. It was so wonderful to have them join us.

Last year Maya had some struggles at the walk, but this year she did so much better. Despite the noise and all the distractions, she didn't reach her breaking point. Christina, Maya's respite/hab provider was there to support her. She came on her own and brought a friend. It really brought out the best in Maya. I've said it before Maya and Christina have this little sister, big sister thing going on. She can encourage Maya in ways that no one else can. Even though Maya was in sensory overload she worked through it and we were able to walk the entire parade with our team. We even stayed after and watched the rest of the parade.

I'll say it again and and again. I am so grateful for all the support my friends and family give me. Whether it's to come out once a year to walk with us, have play dates with Maya or just give a little money to the Down Syndrome Network, it means so much. It means that they see Maya for who she is, a fun little girl, my daughter, a person who happens to have Down syndrome. They support me on this journey in ways that I can not even describe. I am very blessed.

Maya's Dream Team







Tuesday, October 30, 2012

31 for 21, Day 29 -2012

It was a busy weekend so I'm catching up on the last few days.  Here's what I wanted to write for Day 26.  Our first school field trip of the year.  The annual pumpkin patch.  This year Maya's Dada was able to come with us.  Maya was so excited to have him there.  Usually field trips are a major challenge.  But the last year Maya did really well at the pumpkin patch.  This year it was even better. Maya was quite the independent girl.  She enjoyed the hay ride, the maze and decorating her pumpkin.  Then she was done!  That's my girl.  When she's done, she's done.






Thursday, October 25, 2012

31 for 21, Day 25 - 2012

Snippet of my day.

Today I stuck to my guns and didn't pick up Maya and carry her in my arms after school.  This may seem like a small task, or you may ask, why can't you carry her?  99% of the kids walk to and from school (to the parking lot or the bus).  But Maya for what reason I have no idea, doesn't do that.  She stands in front of me and now she says "up".  If I don't pick her up she grabs my dress, she tugs, she sits on her bum and won't move.  And during the hot months, it's torture to stand there in 100 degree weather, trying to get her to walk with me.

The weather was manageable today.  I figure might as well start now.  She is on the verge of being 4 1/2 soon...33 pounds of dead weight and the most wiggly little monster in the world.  It's becoming more and more work to carry her around these days.  

How long does it take Maya to walk from school to the car? Well let's review: first stop, even before we get out of the school gate, she has to stop at the wagon, and try and play with it.  I play, "ready, get set, go!" with her, that usually works a couple of times.  Once we are out the gate the sidewalk fun begins.  I try and entice her, telling her, let's follow your classmates.  She sits on the ground.  Usually a very good tactic since at 90 degrees I'm ready to run for shade.  Today it was pleasant and I was determined....so I just stood there.  Encouraging her as much as I could, telling her she could do it.  "You wanna hold my hand?"  Um, no way!  She's too independent.  Ha ha!  We get to the entrance sign at the parking lot.  We are almost there I say.  Of course she has to read the letters on the sign, a game we played last year.  Then she takes another rest.  I wait patiently.  She gets up and turns to look at the parked bikes.  Ok down the curb to the parking lot that was a big step.  She sees more letters, opps, I forgot about that.  Ironically it says no parking on the ground, and soon she's sitting and proceeds to lay down trying to take her backpack off.  Finally I take the backpack and pretend to start running.  She runs after me.   Yes! We are at the car.  I feel like I've just completed the most difficult task of my day.  That is getting a four year old to do what you want them to do. 

Triumph!